Groucho Marx got a lot of laughs for saying that he’d never want to be a member of a club that would accept him as a member. For people with brain injury, there isn’t anything funny about their new “membership” into the club of the “invisible injury.” However, many people surprise themselves with their strength, insight, and sense of humor — even in the face of adversity.
The best person to understand what living with a brain injury is like is somebody who has been there him or herself.
Meet these five bloggers who are on their own journeys after brain injury and want to share what they have learned along the way. So, if you are searching for encouragement, advice, or information from an authentic source, take a look at the following blogs and the amazing spirits behind them.
Kara Swanson: Rocking Her Life After Brain Injury
Kara Swanson started her brain injury blog when she realized how much she had learned through writing her book, I’ll Carry the Fork, about her 1996 brain injury.
“I have met thousands of people with brain injury during speeches and online, and I have enjoyed a wonderful new life after my brain injury,” Kara says. “I’ve come a long way from the experience I shared in my book and it has been almost entirely positive. I wanted to shout back to the people coming up behind me and let them know that “up the road the skies are clearing.”
Kara was in a car crash when a driver ran a red light. She still experiences headaches and cognitive fatigue, but has discovered many coping strategies despite her long-term symptoms from brain injury.
“My blog is the written expression of my hopeful attitude toward brain injury recovery and life in general,” Kara says. “While it covers topics that are painful, challenging, and frustrating, it has a bottom line and a consistent message that reflects my very firm belief that we are capable of absolutely rocking our lives after brain injury.”
Her blog targets long-term survivors in the brain injury community. “Because my blog is very positive and conveys a hopeful, grateful message, it usually does not resonate with people most recently injured,” Kara says. “There is a lot of anger and grief that needs to have its time and its voice. That’s important and I get that.”
“While it covers topics that are painful, challenging, and frustrating, it has a bottom line and a consistent message that reflects my very firm belief that we are capable of absolutely rocking our lives after brain injury,” says Kara Swanson.
“I try to target the people who are left, after a year or so, with stubborn symptoms and forever changed lives. The group that’s stuck between what can never be again and what is impossible to conceive,” she says.
While her advice is primarily for people with brain injury, much of it can be applied to the general public. “Brain injury or not, everyone is crippled by something. No one goes through life without change, challenge, and heartbreak,” Kara says. “Everyone will experience something that absolutely rocks his or her world sideways, and those of us with brain injury are fortunate that we have survived to recover from ours.”
Kimberly Carnevale: Butterflies After Brain Injury
Kimberly Carnevale started her blog “Hitting the Road with Brain Injury Riding Shotgun,” when she embarked on an RV trip from New Jersey to Tennessee with her daughter and her service dogs.
Originally, the blog started out as a way for her close friends and family to keep track of where she was and how she was doing as a safety precaution. That way, someone would know if she experienced a “cognitive slip” along the way, one of the lasting symptoms of her brain injury. But as she started to write, more and more people followed her along her journey.
“I had an audience I hadn’t anticipated,” Kimberly says.
Kimberly and her daughter, Sarah, turned their road trip into a campaign to raise awareness about brain injury. She started referring to her blog followers — who were mostly people with brain injury and their families — as her “butterflies,” associating their journey as one similar to emerging from a cocoon.
Their vehicle became known as the Butterfly Express. Kimberly wrote her blog address on the vehicle with window markers. At every truck stop and rest area, she and her daughter put up green paper butterflies, one to represent each of her “butterflies” and distributed pamphlets about brain injury.
“People don’t want to hear about brain injury until it’s happened to them or to someone they love,” Kimberly says.
Kimberly’s brain injury occurred in 1998 when a tractor-trailer rear-ended her car. In that moment, her dream of riding for the US Equestrian team was smashed. With the help of her faith and her first service dog, Dewey, she says she began a new episode of her life.
Kimberly launched an educational program called Canine and Abled to teach the public about service dogs. She now trains problem dogs, and hopes to start an Equine Ability Program to provide therapy using horses.
When Kimberly, Sarah, and the dogs arrived in Tennessee, she considered ending her blog. “I thought it was the end of the road, but people were very upset about it not continuing,” she says. “I felt so supported and loved by them.”
Kimberly’s blog covers many topics, and reflects the thoughts of someone with a brain injury. “It goes all over the place… like us, people with brain injury, we’re all over the place.”
With her strong faith, she says, “I don’t write, I just push the pen. God writes the words.”
Shireen Jeejeebhoy: Deconstructing Misconceptions about Brain Injury
Author Shireen Jeejeebhoy blogs about many different topics. While much of it is based on her books, Lifeliner and She, Shireen has started writing about brain injury, too. She brings her perspective as someone with a mild TBI.
“There is nothing out there for those of us with “mild” injuries who have internal body function problems,” Shireen says.
When Shireen was involved in a car crash in 2000, she did not go to a hospital. She sustained a closed head injury, although she didn’t even find out about it until months after the collision.
“Concussions are only mentioned in the context of the sports world,” she says. “It’s like if you’re concussed from a non-sports cause then you’re not really brain injured and your problems are minor, no big deal.”
Shireen has encountered other misconceptions about people with brain injury as well. “What bothers me most is the fact that medical community insists that no matter how much you heal in the first two years, that’s pretty much as how far you’ll get,” she says. “Not true.”
Shireen says she experienced improvements five to seven years after the four-car crash that caused her injury.
She started her first blog anonymously while going through a lawsuit that involved her crash. “I had relearned to write, and I wanted to put my writing out in public,” Shireen says. “I wanted to practice. And most of all, I was filled with this pent-up emotion that needed an outlet.”
Her second blog began as a way to publicize her book. It was there that she began to write about her brain injury after her lawsuit was over.
“I hope my readers will learn something new about living with brain injury that is helpful to them or at least helps them understand their condition better,” says Shireen Jeejeebhoy.
“My blog has helped me express my feelings and knowledge about my brain injury treatments and related issues as well as fully process all that’s happened to me,” she says. “It’s also given me a ways to record what I’ve learned so when I forget I can go back and remind myself.”
Shireen says she hopes her writing helps others, too.
“I hope people enjoy what I write, maybe get provoked into thinking about something differently,” she says. “I hope my readers will learn something new about living with brain injury that is helpful to them or at least helps them understand their condition better.”
Mark Kerrigan: Grateful After Brain Injury
Mark Kerrigan’s blog, “Life After Traumatic Brain Injury,” is filled not only with personal stories and advice, but also with information, resources, and videos that he has researched and posted.
Mark sustained a brain injury in 1989, when he went riding on a wet road.
After four weeks in a coma, he had to relearn how to walk and talk. Today, he has made significant progress in his recovery, although he still experiences problems, including a slight limp when he walks and less control over his emotions.
Mark originally started a blog on grammar and punctuation, but was looking for something more. “I did a lot of thinking about what I was passionate about,” Mark recalls.
After realizing that he genuinely wanted to help others, he started his blog about brain injury in June 2009.
“I think it’s therapeutic. It’s a release,” Mark says. “It makes me realize how far I’ve come. It makes me feel very grateful.”
Mark says he posts on his blog often, about five to ten times a month. That way, his readers can consistently count on finding new information on his site.
“I wish there was something out there for my parents and family when I was going through my injury,” he says.
“It may seem like your world’s coming to an end, that it’s upside down, but you can get through it if you have the faith.”
The blog is not only a resource for his readers; Mark finds it helpful for himself as well. “I have trouble expressing myself clearly,” he says. “I can’t always get my thoughts out straight. But since I type, I can always go back and edit.”
Zach Gauvin: Looking Forward After Brain Injury
When Zach Gauvin was 17, doctors told his mother that he had a five percent chance of surviving. He was in a coma for a month after a serious drinking and driving car crash. The doctors said that if Zach did survive, he would be a vegetable.
Zachary, age 22, just graduated from the University of Massachusetts with a bachelors degree in journalism and a minor in political science. He has a book coming out shortly, and has started a blog, “Brain injury Support Group.” He is clearly not a vegetable.
“It wasn’t until after my brain injury that I was interested in writing,” Zach says.
Zach started working on his book, Miracle Kid, in 2008, when he was a sophomore in college. A professor at the University of Massachusetts suggested he start a blog to build a future audience for his book.
“I started to create it and I thought — what do I know that other people don’t know?”
Zach’s blog became much more than a promotional tool for his future book. He began to offer advice and suggestions to other people with brain injury. Soon after it started, his blog had followers worldwide.
“I talked almost every day with a woman in England when I was in college,” Zach says. “Recently, I got an email from a woman in India.”
Zach says that the value of having a blog is the audience that it can reach. “It gives you more access to people,” he says. “The more people I can help, the better.” Zach advises others to persevere.
“You’ve got to just look forward, you can’t look back. Only look back in order to see how far you’ve come.”
Information and Attitude
After their own brain injuries, these five bloggers were seeking information — and a way to express themselves. They began sharing their experiences for others and for themselves; their perseverance and encouragement are contagious. Nobody ever chooses a membership in this club for people with brain injury, but sometimes a club that welcomes you for who you are has bigger-picture benefits.
Visit their blogs and find out for yourself.
- Kara Swanson’s Brain Injury Blog
- Kimberly Carnevale: Hitting the Road with Brain Injury Riding Shotgun
- Shireen Jeejeebhoy’s Blog
- Mark Kerrigan: Life After Traumatic Brain Injury
- Zachary Gauvin: Brain Injury Support Group
“You’ve got to just look forward, you can’t look back,” says Zachary Gauvin. “Only look back in order to see how far you’ve come.”
Written exclusively for BrainLine by Katherine Wise.
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Anonymous replied on Permalink
Fantastic eye opener. My son sustained Tbi in 1991. How can he post his story and share with others? Miraculous recovery like those survivors. Thanks
Debbie Wilson replied on Permalink
My Dearest Soldier My dearest soldier, I remember when you would have died for me, Why then oh why, is suicide the only option you can now see? I sit here alone and wish I knew how to call you up on the phone. I wish I knew who or where you were so I could make sure you aren't alone. I wish you would send me your email so I could just drop you a line, The real truth is, I want some guarantee that you will eventually be just fine. But wars hurt and mame and the warriors never come home quite the same. You all have paid such an ultimate price and life in this world can get insane. If I could scream at you I would say just wait a little longer until you want to again live. But I know that with PTSD, brain trauma, wheelchair’s, and all the rest, your feeling you must have nothing else to give. But if you will take just a moment to listen to a friend, I promise with time the heart can again mend. If you listen close I’ll tell you the truth, even with a battered body or mind, you still have something special you can give a friend. Make sure someone gets you some access to a phone and a computer, Because I am excited to see what you can all do if You choose to live until the future. There will be hope again in your life, I Promise! With Loving Regards, Debbie Wilson 12-26-2011
Elise replied on Permalink
My name is Elise and I sustained a coma due to a heart arrhythmia that caused me to pass out while visiting my grandson at his elementary school. I apparently fell on the asphalt and my daughter took me to the hospital because I kept asking the same series of questions over and over. In my mind I went back to what was going on in my life 2 years previously to that day when I fell. I don't remember the 8 hours of that day and still don't remember that day very well. They sent me home when I finally came back to myself later on that day. However,I am not the same person since then. I still have a hard time remembering things I use to know and I still repeat myself. At first it was really hard for my family and friends not to get upset with me, after awhile it is hard not to get frustrated with the different person who emerges after the concussion. I have always had a strong belief in God, and he has made me physically better and emotionally stronger since the concussion, which happened ten years ago now. I appreciate this blog, because there are still days that are difficult. All I can say is, that I agree with someone who said in their blog, don't look back at who you were, be grateful for the strength and courage it took you to survive and even flourish today. There will always be people who don't understand and be critical of something you said or didn't say, or something you didn't remember. We, as survivors can't let anyone for even one minute deny us the gift of life and the joy of life. Thank-you for reading this, I hope it will encourage someone else like me.
Anonymous replied on Permalink
I have been very moved reading your blogs, you are all such courageous people. I want to share something we found out about brain injury after our son committed suicide five years ago. We found that in around a third of brain injuries the pituitary gland is damaged, and this may be responsible for such after-effects as fatigue, depression, infertility, loss of sex drive and obesity. It's treatable with hormone replacement and often leads to dramatic improvement in mood and cognitive function, as well as restored sex drive and fertility, and loss of weight. Please go to www.headinjuryhypo.org.uk for more information because some of you may be helped. http://www.headinjuryhypo.org.uk/html/dr_mark_porter.html gives a good overview. The best of luck!
Anonymous replied on Permalink
Brianplatts.blogspot.com. Recovery from a severe TBI
Jenny replied on Permalink
My son had a TBI fifteen years ago. Our latest adventure has been to produce a cookbook especially designed for people with brain injury. We worked on it together bringing different insights to the project. We get more traction working together when we recognize the talents each of us has and build on that. We fill in the gaps for each other. You can go to our website to see our work. shorttakes.org
Craig Phillips replied on Permalink
You guys are missing the biggest guns. Craig Phillips on second chance to live. Read his about me and other articles about his past experiences. He is a legend.
Anonymous replied on Permalink
thank you for sharing this--wonderful to know others with PCS or TBI related issues are represented in the blog sphere. My own experience has been a lucky one; my ENT referred me to an optometrist specialist who is an expert in vertical heterophoria, the condition I apparently had (but been undiagnosed for years with other "specialists"). I have thought about creating my own blog, but feel like it would have been more worthwhile if i'd begun during exploration for treatment instead of starting with my success story....
Anonymous replied on Permalink
Interesting recent TBI article: http://psychcentral.com/blog/archives/2016/03/28/traumatic-brain-injury-...
Mario A.C. Torres replied on Permalink
Hello my name is Mario Torres and I am a survivor of a Traumatic Brian Injury. The experiences shared on Brainline.org inspire me to share my story. I suffered from a severe TBI with a hematoma in 1997; I flat-lined twice and was brought back by the Grace of our lord, and defibrillator. I had a tracheotomy and G-tube along with the other IV’s living for me. I was in a coma for three months, and when I woke I had to relive life again. Learning how to walk, talk, eat, and personally care for myself was all something new with assistance. After being released in 1998 from the hospital, I confronted the numerous stages of rehabilitation from extreme happiness to sadness. Two years later, following intense behaviors, I decided to go back to school. Since then, I have learned so much about myself and only encourage others to do the same. I want to work with other individuals who are rehabilitating or their family members who just need some positive words of support. I am very familiar with the process of rehabilitation of a TBI and know that success is an alternate route. Please check out my webpage, it is under construction but hopefully it may answer some questions.
Mario A.C. Torres
Anonymous replied on Permalink
Amazing! I have just started blogging about Life After A TBI, and today is the first attempt at finding a community of like minded citizens! The first address my search engine came up with was this one! Please visit me at https://www.andyetheregoi.com and help me feel like part of a community!!